63: Busy

I started the new clinical trial a week ago, with a visit that included some baseline memory tests (including some for Wendy - and then we sort of played that game - not together where one spouse tries to guess what the other said was a favorite thing…) and a ton of forms. They took 19 vials of blood to rule out everything. I suppose since it is a medicine I’ll be taking, this is a good thing - they want to study the complete system. If I pass those blood tests, I’ll have an MRI and a nasal cavity exam (the drug is nasally ingested) on the next visit and then finally two different PET scans. The first to look for amyloid plaques (which I am mixed about - I have to have them in order to continue the trial, but I kind of hope that Leqembi has done it’s magic and I have none), and then finally a new thing for me - a pet scan to look at something called Microglia.

Microglia are the “resident janitors of the central nervous system, and this new drug is looking to reduce inflammation of the Microglia and increase immune response. That’s pretty exciting. The study people are really happy that I’m taking Leqembi as this will give them a chance to see how the two interact. So, overall this is very exciting, and I really hope that I get in, and that I actually get the drug and not the placebo. There will be two cohorts of 8 people in the study, and of those, 6 will get the drug and 2 will not. Those are decent odds.

I’m also starting another trial that I mentioned in my last post - They’ll do on-line neurocognitive exams for two years while also keeping an eye out for other trials that might be beneficial. Anyone with Alzheimer’s should look into it here.

https://www.everythingad.org/

I had my first session in the Family and Persons Living With Dementia panel. This is a joint project of the Alzheimer’s Association and the University of Southern California’s Schaeffer Center. Its goal is to quantify the “cost” (financial and intellectual) to families living with Alzheimer’s or another dementia. This panel will “meet” four times per year. The group is evenly split between people living with dementia and people caring for them. At this time there are no pairs in the group. It’s a wide range of folks, and we had some good conversations. The work is very important, and will be presented to the government to assist with the process of planning for the massive influx of Alzheimer’s patients that has been predicted for the next generation.

Wendy and I also started a trial with the University of Michigan called Shared Lives and Everyday Experiences in Partners. This is another multi year project, of which this is phase one. It involves taking on-line surveys (regarding health and our activities) and wearing one of these for a week. This study will look into sleep patterns and associated brain health. So, yeah. Keeping busy fighting the fight.

There was a lovely event in a town near me, called Facing Alzheimer’s Together: A Community Conversation on Impact, Resources, and Policy. It was sponsored by the (you guessed it) Alzheimer’s Association and we talked about the political agenda of the past year and looked a bit into the future. Here is a link to my part of it: 2025-12-09 Marlboro Senior Center.MOV.

For anyone who is interested, I’ll be doing a webinar in association with the Alzheimer’s Association (PA chapter) and the PA Department of Aging. If you want to join this is the registration link. The flyer, with date and time is:

I’ll also be the “first hand” account at the following talk, also in Pennsylvania, that unfortunately is not open to the general public. But it’s a nice write up, and hopefully it’ll be videotaped so I can post it after.

I’m so happy to have the opportunity to do this work. And in that light, I’ll close with something written by Wendy:

Transforming World, by Wendy Bradley

It’s a fascinating thing to see, it really is. I’m watching my husband transform, and not in the ways I assumed he would when he was diagnosed with Early Onset Alzheimer’s almost a year and a half ago.

I’m watching my introverted, wall flower partner blossom into a vibrant soothsayer of sorts. I’m not sure he can see into the future really, but he is most assuredly creating the future he sees for himself with determination and purpose.

He is inspirational, not only to me, but to others. He works tirelessly as an advocate and speaks from his heart to anyone who will pull up a chair and listen. I’ve watched him work a room at area Senior Centers, and I’ve listened to his gently coaxing over the phone in conversation with others newly diagnosed. He is present for strangers. This is a man who would get on a plane and throw on his headphones before buckling his seatbelt in an attempt to rid himself of any source of disruption or conversation with a weary fellow traveler. (There is a distinct reason we ended up together…we balance each other out…I make penpals on planes, encourage people to write their stories down and share their voice with the world, I find people we know in common, it’s so directly in contrast to Sean’s past personality.)

And yet, here we are today. He extends himself to others in a way I’ve never been witness to in our thirty plus years of togetherness. What a joy this is to bear witness to, to watch him flourish, to see him find his potential and live it.

Oh, Alzheimer’s still sucks, but I guess it can provide a new lease on a transformed life. I’m sticking with this sentiment for as long as I can.

Will things change? Absolutely, I’m not a fool, I know what will come. But for today, I’m good. I’ll watch with quiet amazement as this man becomes…whatever it is he becomes.

Oh, and a big thumbs up to Gov. Kathy Hochul for signing the Medical Aid In Dying Act. It won’t help me on my journey, but it can help countless others - and if you don’t agree with it, or your religion forbids it - don’t do it. It’s that simple. There are far too many safeguards built in for any of the scare-mongers’ fears to be realized.

Thank you for reading, watching, listening, caring and (when it comes out) buying the book! I hope your upcoming year is great - and despite my disease - I know that mine will be.

Sean